Who we are
We are Facial Palsy UK, a charity providing support to people affected by facial palsy. We’ve been doing this since 2012. We do other things too, like telling teachers, doctors and other people what it is like to have facial palsy.
Get in touch
If you want to know more about the personal information we have of yours, or if you want to raise a question with us then do get in touch. If you are under 13 your parent or carer would need to do this. If you are over 13 then you can write to our privacy officer on firstname.lastname@example.org or call us on 0300 030 9333.
We think it would be best if you discussed this with your parent or carer first, and that you copy them into any emails you send.
Personal data – what’s that?
What we mean is any information that could be used to identify you. At its simplest this could be just your name and address; or, it could include a telephone number, email address, a picture or video of you. If you or your parent or carer has contacted us before with questions about facial palsy we might have some sensitive or personal information about what has happened and how you are doing.
Where we get your personal data from and what we do with it?
Basically, we get it from you! If you are under 13 then your parent or carer has to give it to us on your behalf. We don’t buy lists of names. Your parent or carer might sign you and your brothers and sisters up for a family day, or they might contact us to ask how they can help you. Sometimes you or your parent or carer might want us to talk to your doctor or school about you. We would only do this if we had your (or your parent/carer’s) permission.
Sometimes we share stories and pictures about children on our website. Your parent or carer might have sent your story in when you were very young or you might have asked to share your story. When you are under 18 we don’t use your real name next to your picture on our website stories. You can choose the name we use for you on our website. It’s important that you know, if you change your mind and don’t want your pictures or story on our website, just contact us and we will remove them.
Other website mentions and social media links
If you have been interviewed in a newspaper or on television and you and your parents chose to tell everyone your real name, then we might share that story.
Other ways we might get your data
You might get in touch with us to help raise money for us to deliver our services.
You might need some help yourself and maybe someone has contacted us for you.
When you speak or write to us we will sometimes ask you for personal information. Personal information means things like your name, your age, where you live and how we can contact you.
But that’s only if you are over 13. The first thing we would want to know, and check, is how old you are.
If you are 13-18 then you can give us permission (or, ‘consent’) to record some data about you depending on what we are doing and hold on to it for as long as we need to.
So, if you are raising money then you might want to get emails from us about fundraising events, or you might want to do something to raise money. We’d need to keep in touch with you about that.
We are very careful to keep you safe and to keep your information safe. We don’t share it unless you tell us we can (or unless we are really worried about you), and we store it safely.
How long we keep your data for
We have a list of how long we keep all information and what we do with it when it’s time to delete it. We keep it very safe on our systems. Normally if we haven’t heard from you in six years we will remove your data. If your personal story is on our website it will stay there for longer unless you change your mind about sharing it.
You have all the same ‘rights’ with regard to your personal information as adults do. There are 12 rights and you can see them here: https://ico.org.uk/for-organisations/guide-to-the-general-data-protection-regulation-gdpr/individual-rights/
This Children’s Privacy Notice was last updated on 24 September 2018.